Hugs are typically regarded as warm and comforting gestures, providing emotional support and a sense of connection. However, for individuals living with lupus, the experience of a hug can be quite painful. The pain associated with lupus can transform what should be soothing into a source of discomfort, making it challenging for loved ones to offer physical touch. A MyLupusTeam member shared, “When my boyfriend gives me a hug or honestly just any sort of touch, I find it really painful and uncomfortable.”

Lupus affects everyone differently, making the pain experience unique for each person. This means that even something as simple as receiving a hug can be painful for someone with lupus. Understanding these individual differences is essential for finding ways to manage and reduce the discomfort caused by lupus pain. Continue reading to find out how lupus can make hugs painful.

Joint and Muscle Pain

Musculoskeletal (joint and muscle) pain is a common symptom for people with systemic lupus erythematosus (SLE) — the most common type of lupus. Almost 90 percent of people with SLE experience arthralgia (joint pain) at some point during their illness. It’s caused when you have inflammation in your joints, known as inflammatory arthritis, which can make them feel stiff and tender to the touch.

Lupus-related joint pain can occur in any joint, including those involved in giving and receiving hugs. Lupus can cause pain in the shoulders and elbows, making it hard for you to lift your arms to give a hug. If lupus causes inflammation in the joints that connect your ribs to your breastbone or spinal cord, it can cause rib pain that might make hugging painful.

Muscle weakness caused by lupus or medications might also make it difficult for you to raise your arms for a hug. Lupus can cause myalgia (aches and pains) or myositis (inflammation) in your muscles. Myositis can cause weakness in different parts of your body, such as your shoulders and arms. It can also affect the muscles of the chest and abdomen. Corticosteroids — a group of medications that are often used to treat lupus — can cause muscle weakness.

Skin Inflammation

If your immune system attacks your skin, you might wind up with skin inflammation. About 90 percent of people with SLE have some skin involvement. Some people have lupus that only affects their skin, called cutaneous lupus erythematosus.

Skin inflammation with lupus can feel painful or itchy. A MyLupusTeam member described the pain: “It’s like my skin itself actually hurts. It’s not joint pain — it’s like my skin is super sensitive and not in a good way. And not the surface of my skin, but more like underneath near the tissue or muscles or something.”

In lupus, inflammation can happen in the layer of fat under the skin and in the deep tissue covering the muscles called fascia. This inflammation can lead to pain when moving or being touched. These symptoms can be felt in the arms, legs, chest, or all over the body.

Exposure to sunlight might make skin problems worse due to a phenomenon called photosensitivity. This occurs when the skin becomes more sensitive to ultraviolet rays from the sun. In people with lupus, exposure to sunlight can trigger an immune system response, leading to inflammation and various skin issues. A MyLupusTeam member commented, “If I forget sunscreen and go out in sunlight, it hurts so much worse.”

Organ Inflammation

SLE can cause your immune system to attack any organ in your body. Hugs might be uncomfortable if you have inflammation in any of the organs in your chest, stomach, or back, such as:

• Lungs
• Kidneys
• Liver
• Pancreas
• Digestive tract
• Heart

Nerve Damage

Lupus can cause inflammation that damages your nervous system. When the nerves located outside of the brain and spinal cord are damaged, it’s known as peripheral neuropathy. Many people experience numbness, pain, and sensitivity to touch in the affected areas. A MyLupusTeam member described, “When I first got lupus, it was like needles being stuck into my skin.”

Other Conditions

If you’re living with lupus, you may have another autoimmune or chronic (long-term) disease that can make hugs painful.

Rheumatoid arthritis (RA) is another autoimmune disease that, like lupus, can cause joint pain, stiffness, and weakness. RA symptoms can also make hugging painful.

Fibromyalgia is a chronic condition that causes people to be more sensitive to pain. It can cause pain in many areas of the body, including your neck, shoulders, and chest. About 25 percent of people with lupus are also diagnosed with fibromyalgia. A MyLupusTeam member who sometimes finds hugs to be painful shared, “My doctor told me that it was the fibromyalgia. My skin is also very touchy.”

Osteoporosis is a bone disease that weakens your bones and makes them more likely to break. Having lupus increases your risk of osteoporosis. Taking corticosteroids can also increase your risk of developing osteoporosis. While osteoporosis often doesn’t have any symptoms, it can cause low back pain. Back pain or the pain caused by a broken bone may make hugging more painful.

Managing Lupus Pain

You may experience good days and bad days with your lupus pain. You might have worse pain during a lupus flare and less pain when your disease is less active.

Talk to your rheumatologist about how your lupus symptoms affect your daily life. Your doctor may prescribe a medication to help control and prevent flare-ups, such as an antimalarial or immunosuppressive medication. Other possible treatment options for lupus pain include:

• Nonsteroidal anti-inflammatory drugs (NSAIDs) — These drugs reduce pain and inflammation by blocking chemicals that cause inflammation. Examples include ibuprofen (Motrin), naproxen (Aleve), and diclofenac (Cataflam).
• Corticosteroids — This type of medication reduces inflammation caused by lupus. Corticosteroids can be used to treat or prevent lupus flares. Examples include prednisone and methylprednisolone.
• Physical therapy — This kind of treatment can help you learn exercises that decrease your pain.
• Mental health care — This type of therapy might help improve pain if you have depression or anxiety that makes your pain worse.

Managing Relationships With Lupus Pain

Physical touch, like hugging, is an important part of your general health and happiness. However, many people with lupus may feel like their loved ones don’t understand their symptoms. This disconnect can make it hard to maintain relationships with your loved ones. One member shared, “People who don’t have lupus don’t know what it’s like to be so sensitive to touch. Sometimes, just a hug or a little poke can cause a lot of pain, soreness, or a bruise.”

Open and honest communication can help you talk to your loved ones about how your lupus symptoms affect your quality of life. Work out a plan with your partners and loved ones when your symptoms are under control to achieve meaningful relationships. Intimacy can be when lupus symptoms are under control.

A MyLupusTeam member asked, “How do you find a way to enjoy time with your spouse without feeling in pain? I want to have a healthy relationship, not constantly telling him not to touch me because it hurts too much.”

Getting adequate rest and sleep can make the body less sensitive to pain and touch. Try to eat nutritious meals and keep yourself physically active to maintain your overall health.

One member commented, “My husband knew that I was in pain and when I wanted a hug, he was very tender, but it would still hurt. Hugs became a facial expression with us.” Another member suggested, “Gentle hugs with NO PATTING is the best plan.”

Another member shared, “I have the same problem, only it’s my 6-year-old daughter that I cringe from when she touches me sometimes. We’ve started letting me initiate the hugs, and she just asks and holds out her arms when she wants one. She knows sometimes I have to say no, but she knows I really would love to! I have days when I hurt all over and just want to crawl out of my skin, but they pass, and we can get back to hugging!”

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Do you sometimes find it painful to give or receive hugs from your loved ones? What have you done to help manage your symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.